The business of (not) getting better

by Aphra Pell

Young African American Man looks straight at camera. Tilts head on left hand with questioning look. Image in Sepia.
Caption:

I am not getting better. I would like to get better. But the problem is, it's unlikely to happen. Why can't people accept this?

Credit:

© deniskomarov / Adobe Stock

“Are you not getting better?”

“Hey, you’re better!”

“You look better!”

“Are you getting better?”

“But you’re going to get better, right?”

“Don’t think like that, you can get better.”

“You won’t get better if you don’t believe it.”

Better (adj.) – partly or fully recovered from illness, injury, or mental stress.

So much weight of expectation in two syllables and six letters.

Of course, being better is a good thing, whether the recovery is partial or full. My legs are better when I can walk than on the days I zoom around like a dalek. Medication makes my migraines better. If I resemble a functional human, its probably safe to assume I feel better than when I stumble about looking like something scraped out the bottom of a crypt. I have my better times, and I would absolutely love – love, adore, appreciate, sell my grandmother’s grave (she wouldn’t mind) – to be fully, permanently, better.

Problem is, it’s unlikely to happen. That’s not pessimism; it’s reality.

I’m not getting better, and that’s not a defeat

I have EDS-HM with (probably) some co-morbid bells and whistles. This is (probably) caused by a (probably) complex set of genetic mutations that (probably) screw up my collagen and (probably) interfere with various other bodily functions. It’s (probably) not going to get cured without major medical breakthroughs on the cause and potential cures. Major medical advances take time. While I’m not in Methuselah territory, I’m no spring chicken, so it is a reasonable working assumption that I’ve got this for life.

Some people see that conclusion as a sign of defeat. I’ve lost count of the times I’ve been told I need to “believe I can get better.” Worse still, some people take it as a sign of “wanting” to be ill (a hazard of popular opinion many people with an ME diagnosis will be familiar with). After all, surely if you want to get better you’ll focus everything you’ve got on it, right? If you want to be better, you won’t “give in.”

Fighting isn’t helpful if you are punching a mirage

It’s not that simple. Fighting isn’t helpful if you are punching a mirage; you win nothing but exhaustion. The phrase “pick your battles” applies. I do fight, daily, to maintain physical fitness and manage my condition constructively. That’s a good fight; it can be painful and tiring, but it’s real, positive, and influences my quality of life. It makes my health the best it can be. It doesn’t make me well.

Belief in a cure might be a helpful coping mechanism for some people – it all depends on individual psychology – so I don’t want to take that away from others. However, for me believing I’ll get better when there is no practical, evidence-based way to achieve it is no more beneficial than believing in Santa Claus. At least Santa’s parental stand-ins brought presents. Belief can’t make my collagen less wonky, or my pain and fatigue levels normal. For me false hope has proved far more damaging than acceptance. I am not getting better.

In early 2010, I actually got better, sort of. I had a really good patch of health and started to believe that I’d done it (I didn’t know I had EDS at the time, and part of ME/CFS treatment was being drilled with the idea that recovery was conditional on believing it would happen). I started to think I was better. I started to act like I was better, which turned out to be a major mistake when my health crashed horribly. That physical health crash took my mental health with it. Believing I had recovered and discovering I hadn’t was devastating; far more so than adjusting to life with a chronic illness.

Guess what? I am not getting better

That wasn’t the only downside to this idea of getting better as the holy grail. If “getting better” is a matter of what you believe and how hard you fight, then failure to recover becomes just that – a failure. Personal. Guilt-inducing. In reality, of course, that’s rubbish. While it’s a good idea for anyone to take responsibility for the management of their health, some medical conditions simply can’t be fully cured. I felt, and still do feel, guilt for the effect of my illness and disability on the people I love. Carrying the additional weight of expectation that I would get better if I believed the right things or fought harder was crushing.

So, I don’t deal in “getting better.” I deal in living well, in managing my condition to the best of my ability, and in keeping my health as good as it can be (which is sometimes pretty bad). Every day has symptoms, and that’s ok. Some days are worse than others, and that’s ok too. At the coal face of living with chronic illness, I accept reality and make the best of it. It’s really helpful when the people around me do too.


Article by Aphra Pell

Aphra Pell was born slightly too long ago in the UK, to a family with a dilapidated cottage, dogs and cats, and a lot of books.